Since my December 2, 2005 Non-Hodgkin Lymphoma diagnosis, I've been on a slow-motion journey of survivorship. Chemo wiped out my aggressive disease in May, 2006, but an indolent variety is still lurking. I had my thyroid removed due to papillary thyroid cancer in 2011, and was diagnosed with recurrent thyroid cancer in 2017. Join me for a survivor's reflections on life, death, faith, politics, the Bible and everything else. DISCLAIMER: I’m not a doctor, so don't look here for medical advice.

Wednesday, November 14, 2007

November 14, 2007 - Here's a Way You Can Help Me

I know how a lot of you friends and family members have been wondering what you can do to help me, as I prepare for whatever further cancer treatment may be in my future. Ever since my chemotherapy ordeal ended and my family and I no longer needed you to bring food over to the house, there hasn’t been much I could suggest by way of concrete action – except, of course, for supporting me with your prayers and good wishes (for which I’m always grateful).

Now, here’s a little something you can do, and it will only take a couple of minutes. It’s along the lines of political action. I know some of you may be more comfortable than others with the idea of writing your U.S. Senators and Representative, but this is one case where your letter could have a very real impact on whether I will eventually have access to medicine that could save my life.

Take a look at this article by Jonathan Alter (a mantle-cell lymphoma survivor, himself), from the recent Newsweek. It’s called “How Washington Is Nixing a Cancer Cure.”

I’ve written, before, about the radio- immuno- therapy drugs, Bexxar and Zevalin (see my June 23, July 14 and July 20 blog entries). Now, it seems that changes in Medicare reimbursement guidelines could make these promising drugs disappear altogether – despite the fact that they’ve been proven highly effective against follicular non-Hodgkin lymphoma (the type I have).

Why should Medicare reimbursement policies make any difference to someone like me, who’s too young for Medicare? The answer is that Medicare is such a large player in the multi-billion-dollar world of pharmaceuticals that their refusal to pay a fair price for a drug will start a domino effect. First, hospitals and clinics will stop offering it. Then, its manufacturers will have no choice but to cut their losses and pull it from the market. Jonathan Alter explains the machinations of the system far more clearly than I could: so, you’ll have to click on the link and read his article, if you truly want to understand all the ins and outs.

For me, this is more than merely a matter of casual interest. It’s personal. Bexxar and Zevalin are high up on the list of possible future treatments for me. I’ve already responded well to rituximab (Rituxan) – the medicine that serves as the targeting mechanism for Bexxar and Zevalin, enabling them to deliver tiny particles of radioactive material directly to malignant NHL cells.

It’s to my advantage that my doctors keep as many treatment arrows in their quiver as they possibly can. Your e-mail to your U.S. Senators and Representative will help make it so.

Here’s how to contact them. First, highlight and copy the text below into your computer’s clipboard. Then, go to this web page, and click on “U.S. Senators” and “U.S. Representatives” to find the appropriate officials. Then, after completing the preliminaries, simply paste the text into the field for the body of the message. Make whatever modifications you wish, of course.

(The following was sent to me by Betsy de Parry, a fellow NHL survivor who received Bexxar five years ago, and has not had a recurrence since then. She had not been responding well to other treatments, and credits Bexxar with saving her life. I’ve edited her text down quite a bit; the original was even longer.)

CLICK HERE to send an e-mail to your U.S. Senators and Representative.

Now, here’s the text of the sample e-mail. (There's also an alternate approach, which involves sending a brief e-mail to Betsy de Parry, who's gathering these for the use of lobbyists; I've included that additional information at the end.)

On November 13, Newsweek released a story entitled “How Washington Is Nixing A Cancer Cure.” The link to it is: http://www.newsweek.com/id/70301

I am writing to you in the hope that you will intercede on behalf of thousands of patients whose very lives depend on these drugs which will soon become extinct if the ruling is allowed to take effect on January 1, 2008. I am writing as an individual, not as a member of any group or organization.

Bexxar and Zevalin have proven to be highly effective treatments for non-Hodgkin lymphoma. They are examples of a type of treatment known as radioimmunotherapy.

Radioimmunotherapy, categorized as a radiopharmaceutical under the Medicare payment system, has presented challenges for the Centers for Medicare and Medicaid Services (CMS) since it was first approved. This is because it does not fit neatly into existing categories. Low Medicare reimbursement rates have already made it financially difficult for hospitals to offer these treatments. Several publications, including the Journal of the National Cancer Institute (Volume 99, Issue 7, April 4, 2007) and the New York Times (July 14, 2007), have reported that only 5% and 10% of patients who are eligible for radioimmunotherapy have actually received it.

On November 1, CMS published CMS-1392-FC, which covers changes to the hospital outpatient prospective payment system (OPPS) and sets payment rates for 2008. The new rate cuts payment for Bexxar to approximately one-half its cost. Similar issues apply to Zevalin. This will force hospitals to choose between subsidizing or abandoning the treatment. Abandonment is the most likely response, as both the American Society of Hematology (ASH) and the American Society of Clinical Oncologists (ASCO), and others, have warned, in letters they sent to CMS during the comment period prior to the final ruling.

ASH, in fact, states that “It (the ruling) will eliminate one of the few treatment options and perhaps the only treatment option for some patients with non-Hodgkins lymphoma who have failed chemotherapy treatment.”

CMS, in its final ruling, disputes this fear, saying that “given that the Medicare population is such a dominant portion of the population to which these services are targeted, we do not believe that hospitals will cease to provide the service.” With all due respect, how does CMS expect hospitals to provide any service for which they will lose money?

Additionally, CMS warns that “under 42 CFR 489.53(a)(2), CMS may terminate the provider agreement of any hospital that furnishes this or any other service to its patients but fails to also furnish it to Medicare patients who need it.” Surely no hospital will jeopardize its provider agreement. Thus, if these treatments are unavailable to Medicare patients, they will also be unavailable to anyone else.

CMS has based their recommended reimbursement rates on data from previous hospital claims that they themselves have admitted is flawed, due to widespread errors in coding. Using data that was known to be flawed, the new rate could not have been set accurately.

One thing is certain. The new rate will have long-term and devastating consequences. It will undoubtedly condemn these drugs to medical history. Several scientists and organizations fear that it will make it harder for pharmaceutical companies to develop future innovative therapies.

Much worse, this ruling surely condemns some patients to death.

Because time is so limited, I am asking that your office intercede on behalf of patients whose very lives depend on this and future treatments. I deeply appreciate your help with this matter. Lives are depending on it.

Thank you.

***

Here's an alternate way to express your views on the Bexxar/Zevalin issue (see the text of the e-mail from Betsy de Parry, below). If you're so inclined, you could do this instead of, or in addition to, e-mailing your Senators and Representative direclty.

Dear Friends,

As you know from reading the Newsweek story ( http://www.newsweek.com/id/70301 ), a very effective cancer drug is about to disappear. Several of us are mounting vigorous opposition - and to those of you have written your reps about it, many thanks. Following is way we can make our voices heard much faster than going through the traditional route of emailing our reps and hoping someone reads it.

We now have help from two lobbyists in Washington who know how to maneuver far better than we do. They are working diligently to arrange meetings with senators and representatives who may be able to help reverse the ruling. Karl Schwartz, President of Patients Against Lymphoma, or Karl and myself, may attend these meetings with him. Whether we do or not, it will be hugely helpful for them (or them and us, as the case may be), to represent the patients, families and friends whose lives will be affected if this ruling takes effect.

But – we don’t have time to create another online petition as we did before (which many of you signed - thank you!). Instead, I have volunteered to collect comments, and we need as many as we can possibly get – and as quickly as we can get them (like by next Monday morning).

I have set up a separate email account specifically for this purpose. If each of you will send your comments to that account, I will print them and get them to Washington. The more comments we have, the more impact we have – so I beg each of you to voice your concerns and to ask everyone you know to do likewise. If 100 of us gets 10 people, that's 1000 messages that go straight to Washington!

The email account is:

bdeparry@gmail.com

Please write “CMS-1392-FC” in the subject line. Your message does not need to be long. Feel free to write whatever you wish, and if you aren’t certain what to write, simply copy and paste the following:

I respectfully request an immediate reversal of CMS-1392-FC as it relates to Bexxar and Zevalin.

Please sign your name and include your city and state.

Your information will not be shared with anyone else. It will only be used for the purposes of lobbying our politicians to reverse this ruling.

Finally, "thank you" is an understatement for your support. Words can't convey how much it means.

5 comments:

Just last week, my oncologist suggested that I receive Bexxar or Zevalin when my lymphoma returns. I am shocked that such effective treatments might soon disappear. Thank you for letting me know so I can write my senators while there is still time to save them.

Thanks for this very practical post especially the explanation of the ripple effect to non-medicare patients. I makes me wonder about all sorts of medications that might fall victim to this type of restriction and the people with all sort of ailments, young and old being affected. My rep has been contacted.

Thanks for this very practical post especially the explanation of the ripple effect to non-medicare patients. I makes me wonder about all sorts of medications that might fall victim to this type of restriction and the people with all sort of ailments, young and old being affected. My rep has been contacted.

Thanks Carl for posting this on your blog. I hope other bloggers with lymphoma are doing the same and other bloggers with cancer. This ruling has the potential to affect drug development for everybody's cancer! I too have lymphoma and I was able to be treated with Bexxar as part of a clinical trial (I have an aggressive variety). I think this is an important treatment option for those with both indolent and aggressive lymphomas.

About Me

I am Pastor of the Lamington Presbyterian Church in Bedminster, New Jersey. From time to time I teach Presbyterian Polity at Princeton Theological Seminary and Presbyterian Studies at New Brunswick Theological Seminary. I am married to the Rev. Claire Pula, Director of the Bereavement Program, Hackensack Meridian Hospice in Wall, NJ. We have two children: Benjamin, a singer-songwriter, and Ania, an artist.